Well, I was not sure if I really want my family story to be known to the general public 3 years back then. I had this other worry that someone might just kidnap this and change into theirs, suddenly Kian Foon became someone else.
But at the same time, having a blog seemed to ba a fashion then, as a homemaker with self controlled free time, it looked kind of bad not to have one...
So, being a natural libra, this kind of 50-50 thought has made me written down few posts but never wanted them to be posted until today...
Continue going to hospital every 2 weeks for my girls' infusion and seeing different patients is the key reason behind reviving my blog. I hope I could do something for the patients, at least to share with others what had happened. Hopefully someone may benefit or learn something out of this.
It's the same reason why I want MLDA to be known to all so badly. It's really the real human lifes that are in my mind. I had met up with 2 other Pompe babies but they both died after treatment due to late diagnosis. One after 2 treatments and the other one after 2 years of treatment. The latter sadden me more as he was showing improvement but still it's still too late for him. If they had been treated earlier, things will be totally different. I had seen a Taiwan Pompe boy had his treatment started within a month old, his condition was so good that I could not tell his difference to another normal boy. That was during my Taiwan trip back in 2007.
And I had seen cases of patients that are no longer eligible for treatment because the conditions had extended to their brain. A guideline being practiced in most parts of the world that treatment will not be offered to any patient with neuro/brain involvement. Sad and frustrating but it's true and it's happening before my eyes...
So, you see it's hard not to share with you what I see and how I feel...
KF
Wrote on 3 Aug 2011
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